Now that Maria Miller’s finally left, it’s time to welcome ‘dementia pharma’ to the last chance saloon

In everyday English, a “last chance saloon” means a situation beyond all rational hope.

After decades of working on drugs for Alzheimer’s disease (AD), the best the industry can manage is some drugs which have some effect on symptoms for a few months, but for which there’s no evidence they delay the progression in the long term.

Big Pharma have maintained this deception uptil the very last minute, indeed uptil the patents ran out.

They know they’re now drinking at “the last chance saloon”.

David Cameron backed Maria Miller, and that failed.

He backed the Big Society, and that failed.

Now he has backed research into dementia-busting medications.

After a 16-month inquiry, a verdict was reached on Maria Miller.

Commissioner Hudson found that Miller should have designated the Wimbledon property as her main residence, that she should have reduced her claims by two-sevenths to take account of her parents’ presence and that she overclaimed for interest on the mortgage by around £45,000.

Nonetheless, there was no indication Miller had done anything unlawful or illegal in her deception.

On the other hand, the Japanese drugs company Takeda was fined a record £3.6bn ($6bn) by a federal court in the United States on 8 April 2014 following claims that it concealed a possible link between the drug pioglitazone and bladder cancer.

The fine is the largest to be imposed on any pharmaceutical company.

Takeda’s US partner Eli Lilly, who marketed and sold pioglitazone in the United States between 1999 and 2006, also received a £1.79bn ($3bn) fine.

The diabetes drug pioglitazone, marketed as Actos in the US, received marketing authorisation in Europe in 2000. Actos is marketed and sold in the United Kingdom by Takeda UK Ltd.

Today we found out that Tamiflu doesn’t work so well after all. Roche, the drug company behind it, withheld vital information on its clinical trials for half a decade, but the Cochrane Collaboration, a global not-for-profit organisation of 14,000 academics, finally obtained all the information.

Putting the evidence together, it has found that Tamiflu has little or no impact on complications of flu infection, such as pneumonia.

The huge scandal, of course, is that scandal Roche broke no law by withholding vital information on how well its drug works.

Elsewhere, standardised tobacco packaging is intended to reduce the appeal of tobacco products by removing advertising and increasing the prominence of health warnings.

This measure has strong support from health professionals, particularly as rates of child uptake of smoking are still unacceptably high.

Tobacco industry misrepresentation of the evidence in order to try to block public health interventions by manipulating policy making and public opinion is now well documented.

On March 2011, the National Health Service’s National Institute for Health and Care Excellence (NICE) concluded that donepezil hydrochloride (trade name Aricept, Pfizer) could be ‘recommended as (an option) for managing mild as well as moderate AD’.

The conclusion was drawn despite reportedly poor cost efficacy3 and opinions that the use of the drug is a ‘desperate measure’.

The NICE decision was based on two meta-analyses (the second was an update of the first) of randomised controlled trials (RCTs) that demonstrated donepezil’s effect on measures of cognition, behaviour, function and global skills.

Of the 19 studies included, 12 were produced by the companies that manufacture and market donepezil. And a recent study has found that the effect size of donepezil on cognition is larger in industry-funded than independent trials and this is not explained by the longer duration of industry-funded trials.

The history of anti-dementia drugs is inglorious. This is significant because every pound spent in flogging this dead horse is a pound denied from current persons living well with dementia.

Tacrine is an oral acetylcholinesterase inhibitor previously used for therapy of Alzheimer disease. Tacrine therapy has been linked to several instances of clinically apparent, acute liver injury.

Because of continuing concerns over safety and availability of other acetylcholinesterase inhibitors, tacrine was withdrawn from use in 2013.

And it is widely reported that current candidate drugs for Alzheimer’s disease are running into problems because of their side effect profile.

Maria Miller may have finally left the ‘last chance saloon’.

But it can’t have escaped Big Pharma, despite ‘the G8 dementia summit’, possibly the largest PR stunt for pharma and research funded by pharma in history, that they are currently drinking there.

The deceptions might be so far be legal.

Maria Miller’s claims might have been hyperbolic; at least she didn’t have a highly staged G8 summit afterwards.

But, as with Maria Miller, the court of public opinion may provide otherwise.

Through raising awareness of dementia, we must ensure befriending doesn’t become belittling

Dementia Awareness Week 2014 is this year Sun 18th May – Sat 24th May 2014.

Some ‘symbols’, such as the ‘Purple Angels’, clearly offer much reassurance.

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I am genuinely interested in what ‘dementia awareness’ is.

Raising awareness can mean different things to different people.

It’s easy for me to overestimate what dementia awareness might be, as I have done my undergraduate finals, my Ph.D and my postdoc in brain conditions, and mainly dementia.

I’ve never seen a Dementia Friends script.

I’m mildly worried about whether the information in this script is accurate, but not any more than any other information from any other awareness publications.

Having worked in two head offices of large medical charities, I am more than aware of the crap that is used for fundraising.

But I do worry in case what you’re promoting is simply a source of income, and dwarfs entirely what the message is.

The message here is raising awareness of all things dementia.

We have to be very careful that befriending initiatives do not inadvertently end up belittling the whole issue of dementia.

I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ air fresheners (spoof).

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I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ furry care dice (sic) (spoof), either.

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Some thought inevitably has to go into ‘raising awareness of what’?

Chris Roberts, a supporter of the ‘Dementia Friends’ programme, suggested,

To educate people, so they can spot symptoms early, help others in the community and help carers cope better, to show people in early stages are not to be written off, it’s all about education.”

This is of course a laudable aim.

But spotting symptoms of dementia in yourself may not be as easy as spotting a breast lump or a testicular lump (which admittedly can be difficult to spot).

Some people living with dementia are unaware of their symptoms, a phenomenon known to clinicians as ‘anosognosia’.

Raising awareness of the practical difficulties that Admiral Nurses have had in being commissioned?

And the stories keep on coming of potential or actual actioned cuts of dementia services in the real world: such as this one in Devon, and one in Essex.

I asked Kim Pennock, a prominent dementia campaigner in England, whether campaigners for dementia were concerned about cuts in social care.

“- many are now shouting loudly as the cuts are ridiculous and will put vulnerable people at risk”

Meanwhile, the Alzheimer’s Society have introduced a scheme for accreditating ‘dementia friendliness’.

The process is designed to enable communities to be publicly recognised for working towards becoming dementia-friendly and to show that they are following common criteria that are based on “what we know is important to people affected by dementia and will truly change their experience.”

It would be odd if the Alzheimer’s Society would be the sole arbiter of dementia friendliness.

I find this particularly perplexing as the Joseph Rowntree Foundation have done wonderful work on dementia friendly cities such as York.

Also I really cannot praise enough the work by ‘Innovations in dementia‘.

Innovations in Dementia has in the past been working through the Ageing Well programme with two areas, Hampshire and Sheffield, to support their work to create dementia friendly communities.

As part of the work in Hampshire, they have produced a dementia friendly communities toolkit, which was designed to support work at a local level.

The tools have even been used by the Alzheimer’s Society locally.

But the Alzheimer’s Society has a massive business advantage nationally.

Its ‘Dementia Friends’ programme has massive funding.

The Alzheimer’s Society also has capable resources for its marketing.

The Alzheimer’s Society has just appointed Lida to creating a series of campaigns that aim to increase the acquisition of new supporters and grow its mass participation events.

But accreditation can be good for ‘competitive advantage’.

The UK division of Hilton Worldwide has become the first hotel company to be awarded the Carbon Trust Standard after measuring and reducing its carbon footprint.

The award requires organisations to measure, manage and reduce their carbon footprint and make reductions vear-on-year.

Hilton believes the accreditation will give it a competitive advantage over rivals when the government’s Carbon Reduction Commitment league table begins next year.

There’s no doubt in my mind that dementia ‘friendliness’, however delivered, is a wonderful societal aim.

But it should not be a cover for cuts in social care or in the NHS.

And also it’s widely established that ‘Dementia Friends’ cannot be used in place of training for those who need more than basics.

I, too, will be doing my bit too though for raising awareness too.

I’ll be doing a ‘Meet the author’ slot at the London Alzheimer’s Show.

Please follow the Show on Twitter (@AlzheimersShow).

I think also it’ll be possible to see my book, a book which is very ‘un-medical’ in its approach. It’s all about celebrating the individuality of a person, what he or she can do, and how the environment is so important for quality of life.

It’s a different way of doing things.

But that’s also raising awareness.